“The writer, when he is also an artist, is someone who admits what others don’t dare reveal.”
~ Elia Kazan
Posted in Uncategorized on August 21, 2012| 1 Comment »
“The writer, when he is also an artist, is someone who admits what others don’t dare reveal.”
~ Elia Kazan
Posted in Anderson School, autism, sensory stuff, swimming, Uncategorized, tagged anger, jealousy, karma, resentment, Rhinebeck, Scare-Me-Nots, sledgehammer, smash window, swimming in the river on August 19, 2012| 7 Comments »
I felt anger yesterday. And resentment. Envy. Ugly thoughts. I don’t belong on facebook because of my hyper-sensitivity, but I’m on it to be the Scare-Me-Not mommy. Facebook, childishly, really hurts. I look around the site and see things that make me jealous, or left out, or angry.
Sisters on a beach vacation – beautiful, strong sisters I wish with all my heart were my own. Family at Yankee Stadium – something I’d love to be invited to (and have vocalized this wish to my mother many times when she was one of the crew) but have been left out of over and over again until I gave up. Young couples with their arms around each other, grinning ear to ear. Friends who get 3 vacations in one summer. The beach, the beach, the beach. Their children playing together, jumping in the waves. More sisters, four or five, all grinning, all looking like one another, all there for one another, no matter what.
(Oh, to bring Jonah back to the beach. To hear him gleefully cry “the ocean!” again. Now, it’s impossible. Next year I will plan ahead and see if I can hire someone like Joe to go with me to help me with him – and we’ll take him to Cape Cod. )
The young family living in Hawaii. The really nice rich cousin whose family goes to Rome, or Milan, or wherever else the 1% go for vacation. The family who has little material possessions yet is drowning in love.
Then, the people fighting diseases, fighting for causes, fighting for their children…trapped in the midst of horrible things – all of them rooted deep in faith, all of them brave and uncomplaining.
And then there is me.
I don’t have the diplomacy to keep my mouth shut and I don’t have the grace to be uncomplaining and I don’t have the faith to hold me up.
For all those who so kindly commented on my last post, you see I am mostly just a little girl, emotionally – frightened and bratty as hell. The spoiled only child who grew into the downwardly mobile idealistic hippie chick college student, who grew into a married woman who had a baby largely because she knew the child would have an amazing father (never even considering what kind of a mother I would make) who grew yet again into a numbed, dumbed-down version of herself – a broken, tired, jealous, Peri-menopausal mess.
There is no heroism in me and very little strength.
The acts of kindness I like to commit are only a conscious effort to combat what I know about myself…to have something, anything, to put some weight on the other side of the scale. I like to believe myself a Buddhist, a least a little, and a Christian, a little more, and yet I fall so short of the ideals, the teachings. I can’t stop these tight, tears-behind-my-eyes, ugly feelings that come roaring up inside me like a sickness.
So yesterday, when all was said and done, I eventually reaped what I had sown – ripe seeds of nasty, intrusive, pissy, uncalled-for emotions.
But I’ll get back to that later.
My mom and I drove down for our Saturday Jonah visit, and, as Andy said later, “he was on his A game.” He was so amazingly good. Almost too good. What do I mean by that? I guess mostly that it’s easier to leave him behind when he is aggressive and scream-y and difficult. When he’s so good, I want to hold him close to me and never let go.
I taped a small “conversation” I had with Jonah but I’m not sure how easy it is to hear. If you listen closely, at the very end, Andy asks, “Jonah, what’s a fart say?” and Jonah blows a raspberry.
And not only did he go swimming at the river,

Andy, strapping Jonah into his car harness as Jonah laughs hysterically and clutches “purple octopus.”
…but we also drove to “grocery store” at Jonah’s request to buy waffles and syrup and orange soda. I watched as my boy got his own cart, spun it around and into the store, expertly steered it past both produce and people, and acted like a good little kid, only occasionally asking for something we weren’t going to buy (and taking it very well when we said “not now” or “tomorrow” or any of the other distraction words — anything but “no.”) Jonah acted better, even, than some of the other kids there. Of course we did have to go to the self-check out to avoid any waiting, but still it was so incredibly cool to watch him growing and learning and doing so well.
When my mom and I left, it was with the hope we always have when Boo is good – that he will continue in this direction, steadily learning patience and life skills as well as academics, gradually improving, progressively making his way out of aggression and into verbalization. Socialization. Happiness. It never happens, of course – there is always the backslide, but every time, we hope – we have learned its necessity.
When I returned home from our visit, I drove up to the Rensselaerville Falls and made a large nature art creation. Nobody was around. Nobody almost ever is…even when the parking lot is full, most people are on the ridiculously steep trails. I hefted rocks that I looked at after I was done, wondering how I’d lifted some of them at all — then, with my rock-circle-wall sufficiently constructed, I began decorating it, first with two branches to make a cross, then with fallen leaves I could find on the ground or trapped swirling around a stick in the water.
I sat on a rock shelf nearby and listened to the waterfall, always rushing, never-ending, as calming and reassuring a sound I’d ever heard. I first searched for patterns in the sound, and for a while I opened myself further and let them enter me. When I arose from my reverie, I realized I had made this creation for Liam the Brave – The sweet, suffering toddler for whom I made the box.
And I walked fully clothed into the area of water surrounding me, into the middle toward the next waterfall level, feet groping as the water rose higher and higher on me. To my calves. My mid-thighs. My waist. Close enough to the drop of the falls for the sound to swallow my screams, loud and long and enraged. I screamed and thrashed around in the water as if dousing Wicked Witches into melting pools. I cried and I sobbed. I yelled primal, awful AAAAAHHHHHs, and, finally, raised my body tall and straight.
I walked purposefully up and out of the pool of water, back over to my rock creation, and felt the rage rise again. I barely stopped myself from deconstructing the creation, rock by rock, and shot-putting the smaller ones into the water, smashing them against rocks, pitching them at the falls.
But I didn’t. It isn’t mine anymore, I thought. It’s Liam’s now.
I picked up my things – my bug repellent, my camera, my sandals – and carried them up the hill, along the trail, and back to the car.
It was not until the moment I reached for the driver’s door handle that I realized I’d locked the doors (something I almost never, ever do).
With a sinking heart, I realized I’d left my purse (with my cell phone and my keys) in the trunk.
And what did I do? I smiled. The karmic slap. You reap what you sow, you jealous, angry bitch.
Instead of finding someone in the Huyck Preserve office (I was sure it was closed anyway) or knocking on a neighbor’s door to ask if I could use their phone to call AAA, I just smiled again.
I know what I’ll do.
I searched around the parking lot for a little while until I found what I thought was a hefty, perfect, pointed rock. Then I walked over to the driver’s side way-back triangle-window, and brought down the rock as hard as I could, right in the middle of the glass. Instead of hearing a satisfying shatter, I watched a white scratch appear as the rock bounced off. It was loud as hell, though, echoing throughout the park. Again and again I brought the rock down on the glass. More and more and more white scratches appeared. Some small nicks. Nothing much else. By now the glass would need replacing anyway, I realized, whether I broke it or not.
So I reached down, grabbed up the uncomplaining rock, and walked maybe two feet away from the car. I aimed as best I could and threw the rock at the window with all the strength I had. Rock bounced off window. I picked it up and threw it again, where it bashed in the silver trim halfway between the way-back-triangle window and the back window. Still I threw it again, this time making the familiar white-mark-scratch, only this time even further off mark, on the back window.
At this point I was half in tears at my stupidity and half-laughing at the strange fun of trying to bash a window in with a heavy, sharp rock.
Finally, I walked to the office, which was actually open, and found a young man inside. “Did you just hear all that noise?” I asked him. “Yeah,” he answered. “I was about to come out and see what’s going on.”
“What’s going on,” I said, “is I’m trying to bash out my back window because I locked my keys in the car. Do you happen to have a hammer?”
He did. Both a sledgehammer and a pick-axe. He chose the sledgehammer and held it out to me. “Do you want to do it or do you want me to do it?” he asked. “You do it, please,” I answered, not wanting to make a wild swing and cave in the roof or something.
“Well I’ve never done this before,” he said before giving the window just a wee more than a tap with his giant sledgehammer. The result was my anticipated, satisfying SMASH, glass all over the inside of my car.
I thanked the dude, stuck my lanky arm through the hole, unlocked the back door, opened it, stuck my body in the car, used my lanky arm to reach the front door lock and unlock it, popped the trunk, grabbed my purse, slammed the trunk shut and the back door closed, and drove the hell home.
And so, in one of the longest posts I’ve written in quite some time, there lies the moral of the karmic smash:
Don’t waste time being angry, or jealous, or resentful. You’ll end up falling under the illusion of surface-sight and misunderstanding. You’ll end up making assumptions that may not be true. You’ll end up a grasping fool, unhappy and repellent. There is no good in any of it. Let it all go.
Learn it, Amy. And right quick.
Posted in Anderson School, grandma, language, swimming, The Anderson School for Autism, Uncategorized, tagged MTV, Rosetta Stone, Spanish, video, Video Killed the Radio Star on August 2, 2012| 7 Comments »
* I’m not trying to call myself a blog star (did I coin a new phrase there?), but rather to give a small nod to the first video ever played on MTV. Almost-twelve-year-old me was there to watch it all go down, and damn it was cool. August 1, 1981 – we just passed MTV’s 31st birthday. Video changed everything.
It still does. I don’t know what it is about watching the video of Jonah in the last post, but I watch it & watch it & watch it again. It’s as if the video allows (forces?) me to step outside myself, seeing Boo through a stranger’s eyes. I can describe him until I’ve written a doctoral dissertation –but only the video can really show you his abilities, both excellent (swimming & his sense of humor) and not-so-excellent (lack of communication, and inappropriate noise levels). Watching the video is different than the living of it. Different scary. Different real. Or surreal.
How do I explain what I mean?
He’s ten years old. He’s my baby. Too soon to be an adult and, watching that video, I became afraid of all that means and how soon it is coming. In fact it’s speeding up, as time does when we age somehow, and if I’m not careful I will worry in a million ways which will only waste time.
Operating under the assumption that I’m not involved, would I whip out my camera to film him aggressing and post it here? I want to say yes – but I don’t know.
Anyhow, I found older snippet-videos, most of him swimming last year. Here are two:
In this first video we see I am trying to take a photo of Jonah (who very accommodatingly smiled wide for the camera) and then realizing – duh – I have the setting on video.
In this second one you can hear him say “all ny-uh” – which used to be his way to say “all done.” Now he just says “all done.” He has come a long way at Anderson. It happens so quickly, all of this everything. Sometimes I feel as if I’m in slow motion, watching it speed past me.
For once this writer doesn’t know what to say or how to say it.
(Like that hard as hell Spanish course I’m doing on Rosetta Stone. They make you say words when you don’t even know what they mean or how to use them. I say the words over and over and over sometimes before they let me go on. Never do you know the meaning of a word. It’s all pictures, and repetition, letting you in on the secret of Spanish 0h so frustratingly slowly.
Then you have to spell words correctly, accents and all with this keyboard tool they give you. Then you have to hear the differences between ridiculously similar ways to pronounce two completely different words, like the words for baby and drink. I have to admit, in English there are single words that mean different things. Rose. Lash. Stream.
Those are just off the top of my head. Does Spanish also have this? Am I even capable of learning it? I forget all the words. I don’t understand why it is “Tengo frio” (sorry, I don’t have my accents handy) and yet “Estoy hambre.” If I’m even remembering that right. One means I am cold and one means I am hungry, right? Or no? When do you use tengo and when do you use estoy? And why?)
End of rant about learning Spanish. But if you know the answers feel free to chime in. Por favor!
In exactly one month I will no longer be the answer to the universe. (Unless I die before that, in which case I will always be the answer to the universe).
We’re coming up on the first anniversary of Jonah’s going to Anderson.
I miss him a lot tonight.
Posted in autism, behavior, doctor, swimming, Uncategorized, tagged DNA, genetic profile, genetics, Heinz 57, Laura Ingalls Wilder, Mansfield MO, Pa's fiddle, swimming on July 15, 2012| 3 Comments »
Sometimes if I leave too much time between entries, everything happens at once, and then I’m facing the task of the telling of it all. How about a Reader’s Digest version, at least for now? I’m so tired; I think I’m getting sick.
Don’t ask me what the letters in front of the names mean, because I have no clue. I am such a Heinz 57 that I ‘m genetically similar (in order of closeness) to the: French, German, Norwegian, Irish, Austrian, English, Australian, Russian, Ukranian, Polish, Italian, Sardinian (an Italian island), North Italian, Tuscan, Basque, Curripaco, Puinave, Palestinian, Bedouin, Druze, Mayan, Pima, Surui, Karitiana, Mozabite, Byaka Pygmy, Mbuti Pygmy, Mandenkalu, Yoruban, and, last but not least, the San – one of several names used for southern African people who speak “click” languages and whose traditional means of subsistence is hunting and gathering. (yes) There is information about genetic predisposition to disease and carrier status, but not much that helps Jonah. There’s no autism gene marker, and I am not a carrier for arthritis or any eye problems. I actually have a decreased risk of just about everything. There is a “relative finder” part of the site and I am already hearing from people within the site who think they might be my 3rd or 4th cousins, based on lengths of pieces on DNA strands. Or something. I need to take their “Genetetics 101” course. Lots more to this story but I promised the Reader’s Digest version so there you go….at least for now.
* It will be my birthday! *
To end, as usual, I will post Saturday-Jonah pictures. He went to the pediatric rheumatologist on Friday and was more than a little squirrely on Saturday. But we had plenty of water fun!

Boo in the backseat, sucking his thumb, sittin’ all sideways, listening to old school rap with his dad. Punk Ass.
…to get a cool picture of him jumping in, but (A) I’m not a photographer and (B) my camera is your average digital – always seems to take the picture a half a moment after you want it to.
Bedtime for me. It’s like 8pm. LAME.
My very DNA is achy. 😉
Posted in swimming, Uncategorized, tagged A Little Princess, Conversations With My Father, Frances Hodgson Burnett, French Revolution, Irish Lullaby, Magic Wings, Mount Greylock, Thomas Carlyle on July 8, 2012| 5 Comments »
I love that phrase: “I should say.” I hear it in a stuffy, 18th century, crisp British accent, complete with Mr. Carlyle pulling a kerchief from the lace wristlet of his velvet coat mid-quote. Do you know who Thomas Carlyle is? It’s okay if you don’t. He’s but a click away.
The weird thing about me coming across this quote is Mr. Thomas Carlyle wrote The French Revolution: A History, which was the favourite book of protagonist Sara Crewe in Frances Hodgson Burnett’s children’s book A Little Princess which is my favourite book. So that makes me want to read this enormous 3-volume account of the French Revolution (while remaining largely ignorant of our own right here in the U.S.) I feel the need to learn more history. All kinds of history.
My father and I went on a ride to Massachusetts today and I “interviewed” him from a book I’d bought, Conversations with my Father, which asked questions and left blanks so you could create your own memory book. What was your first memory? What were your grandparents like? Did you have a nickname when you were young?
So I listened to my father’s the stories and wrote as fast as I could, and it was a beautiful day; we drove to both Magic Wings and Mt. Greylock, he telling me about his parents, grandparents, uncles, his brother — so many stories and memories. I could almost see him disappear into the memories…as ballboy for his Uncle B’s softball team, full of adolescent pride to be part of the game. His mind re-visiting the comfort of living above his grandparents, and having them nearby to visit. He told me how his grandmother used to put an egg in her hamburger meat before cooking it, to make the burger extra-moist. How he still remembers how delicious it was; how her apple pie beat all. And how, when he was a very little boy, his pretty, sturdy, red-headed mother sang the Irish Lullaby to him at night.
It’s obvious he is someone who learned honor and respect at a young age. Maybe even someone who didn’t need to learn it, because it was part of his personality already and then reinforced by necessity. Who knows what makes us what we are? It’s all these stories, all these memories, all these little details. We came nowhere near finishing the book, but it was a good start.
Magic Wings: where butterflies abound year-round
And
Dad & me up on Mt. Greylock. Gorgeous view!
I guess I’m going backwards in the telling of things this weekend…
On Saturday it was the usual visit to see Boo. It was so usual, it was almost an amalgam of all the visits we ever have. He was good about half the time but definitely what Andy and I have come to call squirrely and he did, at one point, pull my hair in a double-fisted hard yank, but I know what to do — you grab the child’s wrists and push their hands into your head. If you pull away it will hurt. Then he mangled my spare glasses (thank God and little baby Jason I remembered to bring the spare pair). But other than that, he was mostly just wild to swim. Take a bath. Go to the swim-pond. Go to the river. There were many kisses and smiles, and all was certainly not ruined. So, a pictorial for you…
It has, I should say, been an eventful weekend. Now I’m getting a wicked headache and may go to bed even though it’s only 8:13pm. ‘Night.
Posted in Uncategorized, tagged Guster, iritis, Laura Ingalls Wilder, pediatric rheumatologist, uveitis on June 25, 2012| 2 Comments »
Those of you who can find the thread in the midst of all my tangents and ramblings may be wondering what is happening with Jonah’s eyes.
Two or three blog posts ago (the eyes have it) I said:
“What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him…all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions. He’s going to help us get to the bottom of all this. He’s my ace in the hole.”
Luckily, before I needed to ‘play my ace,’ the doctors decided to talk to one another. For now we’ve all come to the conclusion that the Reticert implant is best left in place for now, even though the thing is nearing the end of its efficacy anyway.
Plus now there is all this concern about the “activity” in his right eye. The new drops have mitigated it so far, we’re told.
Next we’ll go back to the pediatric rheumatology doc and find out about another drug she may want to try. I like her; she’s cool, knowledgeable, and kind with Jonah.
Still, I feel like we’ll never get to the bottom of so many things. But maybe that’s all right. It has to be all right. I don’t have any choice but to learn what I can comprehend and weigh options with Jonah’s dad and all the endless scads of doctors.
It’s like looking at my boy through the water, all refracted by light and liquid.
Jonah likes deep pools best where he can swim to the bottom and ‘merboy’-himself along as if finned.
At the bottom of all this is Boo. It’s always been Boo. Like Mitch Albom, Jonah tells his mama: We’re not a wave. We’re part of the ocean.
But whales live in the ocean, Boo. Ones that swallow Jonahs who’ve been insubordinate.
“…(and) you can’t hide; standing under these stars
They know everything… they know where you are.
You’re in your head, you’re all turned around with it
And they’re shining down their light to bring you back again“
~ Careful by Guster
So soon we will know more, about both Boo’s eyes, and maybe try harder to get him to wear sunglasses for his light-sensitivity. And I keep files and notes during doc-conversations so I don’t forget details. If I cannot parent him I can advocate for him. And others like him.
I miss him so much tonight, though. Usually I don’t let myself think about it, about him not being with me. But sometimes because of a scent or a sound, all at once I have a punched-in-the-gut feeling, and I miss him like the day we dropped him off. My God, it’s been almost a year.
He has made a lot of progress. He is toilet trained nearly completely and his language and social skills are coming along. You can ask him a question now and usually he’ll answer it.
“How is your sandwich, Jonah?”
“Good.”
It used to be more like:
“How is your sandwich, Jonah?”
“How is your sandwich, Jonah?”
And still he parrots, but he can make his needs met and now he will initiate conversation. He says hello to teachers and the nurses, and his caregivers too. Now he is so much better at communication.
He’s independent, too. His life has routine, and ritual, and he’s surrounded by people who know how to teach kids like him. I don’t know what I’m on about.
Off I go to breathe and eat.
Posted in autism, Uncategorized, tagged birth father, Father's Day, Spanish on June 17, 2012| 4 Comments »
I like to pretend I can speak Spanish, though truth be told I can speak German better, and I can’t speak that either. So I’ll bet the title is butchered. I do have the Rosetta Stone Spanish learning system, the whole kit and kaboodle, and so learning Spanish is on my list of stuff to do, though it seems like a terribly difficult investment of time and brain-tax.
And so, in my gringo Spanish…the day of the fathers…
There are many in my life. M. My dad. Andy. Father Noone. My Godfather, Poppy, who was also my grandfather; he passed away before I was even engaged. I could say a great many things about each of them, and perhaps I will, but I’m distracted today by one I almost never even think about at all…my birth father. (My birth mother was a married woman with four children, one of whom had already died when I was conceived outside of her marriage).
They give you a bit of non-identifying information in New York State, if you are at least 18 and you request it. The paperwork euphemistically states my birth mother was “separated” from her husband, during which time she became pregnant with me. There is some information on my birth mother. A little bit. She was in her early thirties when she gave birth to me. She was a “collector” (at a bank). She enjoyed watercolors. Her father had a heart attack and died when he was 45. Genetically, from her side I am English, Dutch, German, and Indian. I have always wondered what kind of “Indian” they meant.
From his side, though, there is nothing. No information.
No paternity established. Mystery Sperm Donor.
I guess I am half John Doe along with the English, Dutch, German, and Indian. So that makes me a Heinz 57, and Jonah — well, he must have a bit of every nationality ever known to mankind.
Jonah Boo is the only person I am related to, that I know of. I might want to know more of you related-to-me-people. Maybe. Why don’t I have right to know who you people are, and talk to you — just once? It would come in handy with a lot of Boo’s medical issues, too. The doctors say they wish they had genealogical information on my side, and I feel I’m entitled to at least that.
I wasn’t adopted until I was 6 months old. Foster parents had me because there was some issue with my feet (which they either did not fix or over-fixed, for I’m a pigeon-toed thing to this day). I wonder sometimes if the foster parents maybe wanted to keep me. Wasn’t I just a little freaked out to be whisked away to a new home with new, forever parents? Those forever parents tell me no; I settled right in.
“You were fine,” my mom and dad both insist.
I think that means I was one weird little baby. If someone took Jonah away from me when he was 6 months old, I don’t think he’d have been fine. To tell the truth, I kind of wouldn’t want him to be fine. He was my baby boo. Mine. Maybe when you are fostering a baby, somehow the baby knows s(he)’s not your baby. Maybe, somehow, these little new-humans understand more than we know or can remember.
I forgot about yet another father – one I’ve never thought about at all until today. My foster father, who raised me so briefly, from birth to 6 months. Unless I only had a foster mother. I’m not sure, but I’ll bet it was a couple. My dad tells me when he and my mom drove to get me at the Department of Social Services or wherever, the “transfer the baby” lady told them there were more than a few tears when they came to my foster parents’ house to take me away.
I wonder how many other babies they’d fostered, and if they adopted any of them, or had any kids biologically. Didn’t I miss them at first, just a little? Their smells, their touch? Or was it bad there and so I was happy to get the hell out?
I think about my foster/birth people on three days of the year, mostly. My birthday, Mother’s Day, and Father’s Day. That’s if I think of them at all. I wonder if and when they think about me.
I was talking to M earlier about how my dad and I used to watch cartoons together when I was 6 or 7, and how much better the cartoons were than the crappy ones they slap together today with computer animation bullshit. My dad and I watched the Bugs Bunny and Road Runner Show every Saturday at 11am. We’d lay across the couch with our hound dog, Flower, and laugh at Foghorn Leghorn or Daffy Duck, circa mid seventies. He even watched things like Little House on the Prairie with me, God bless him.
Today we went to church and then out to breakfast, and it was really good. I thank God I have a forever father, and that my son does too. Gracias, mi padres.
Posted in Anderson School, autism, behavior, doctor, Uncategorized, uveitis, tagged glaucoma, The Speed of Dark on June 15, 2012| 1 Comment »
I love when Jonah’s school sends me photos:
Oh, Jonah. Mama and daddy are trying hard to advocate for you while dueling eye docs offer equally insistent yet diametrically-opposed opinions on your Retisert implant & whether or not to take it out.
Eye doc number one strongly recommends NOT taking it out at this time and thinks doing so could be dangerous.
Eye doc number two seems anxious to remove it, and the sooner the better.
Every pediatric ophthalmologist I can find within this area is in the same practice as either doc one or doc two, so no real possibility for another opinion there, and these constant medical problems for my little boy are pissing me off today.
Stop piling all this shit on my child, damnit…. most of Jonah’s doctor visits are two-to-three hours long, odysseys of which Jonah endures with admirable spirit and patience. The poor kid. I do research online and pore over articles I can only half-understand even after two or three re-reads. Today I called the nurse at Jonah’s school and am going to call his primary care doc first thing Monday morning. We all need to advocate together. Andy has long shifts of work now so it takes both of us to figure all this out.
There is more. Doctor number one sees “activity” in Jonah’s right eye indicative of the same uveitis as the left eye. Now Jonah has drops given to him in both eyes. I’ve read articles about uveitis, claiming that it is responsible for 17% of vision loss, and I’ve read articles about how glaucoma is treatable until surgery is necessary. After that I hate the word they say. Blind. I’m going to indulge in my histrionic state of mind and say if Jonah loses his vision I will go fucking stark raving angry, mad with the universe, mad crazy. Mad.
I would never blame Divinity. I don’t believe God works that way. I don’t believe “God does not give you more than you can handle” and I do not believe “God only gives special children to special people.” They are nice things to say but I do not believe them.
“I do not think God makes bad things happen just so that people can grow spiritually. Bad parents do that, my mother said. Bad parents make things hard and painful for their children and then say it was to help them grow. Growing and living are hard enough already; children do not need things to be harder. I think this is true even for normal children. I have watched little children learning to walk; they all struggle and fall down many times. Their faces show that it is not easy. It would be stupid to tie bricks on them to make it harder. If that is true for learning to walk, then I think it is true for other growing and learning as well.
God is supposed to be the good parent, the Father. So I think God would not make things harder than they are. I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge. I think it is like if I were a baby and a rock fell on me and broke my leg. Whatever caused it was an accident. God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”
~ Lou Arrendale, the main character. He has high-functioning autism.
From Elizabeth Moon’s The Speed of Dark
I agree with Lou’s assessment of what God causes and what God doesn’t.
What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him….all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions. He’s going to help us get to the bottom of all this. He’s my ace in the hole.
For now I’m going to just enjoy seeing Jonah tomorrow. He’s been a good boy, they tell us. Good in school, good at his house. Good = no aggressions. Good is what I will focus on. What you focus on expands, they say.
Focus. I really meant no pun. But for now I’m done.
(I didn’t mean to rhyme, either).
Posted in Anderson School, autism, doctor, hospital, The Anderson School for Autism, Uncategorized, tagged aggression, broekn finger, fortitude, jonah, Paul Simon, tantrum on June 7, 2012| 5 Comments »
“They say Jonah was swallowed by a whale
But I say there’s no truth to that tale
I know Jonah
Was swallowed by a song…”
~ Jonah by Paul Simon
Jonah has a broken finger incurred sometime during this morning’s tantrum/attack/aggression, on the bus that takes the kids up to the school building. They took him to the hospital, x-rayed his hand, splinted his finger, brought him back to the house. Not an enormous deal but one that caused me some concern.
His regular nurse was so kind when she called to tell me. “Jonah is fine,” they always start out by saying. Sometimes he isn’t – not really, but at schools like this everything is relative. And he is fine. He is safe and he is fixed up and it is over.
But I asked her to please contact Andy first next time. Andy lives 5 minutes away. I live an hour and a half a way. I have a full time job, and I can’t be at my desk crying, like I nearly always end up doing. I’m a crybaby, they need to understand, “strong mother” or no, and you can’t make me lose it at work because then nobody wins. I need my job. Let Andy call me at 5:30 when I get home from work and then tell me what happened, unless it’s an “he’s not okay” emergency. Andy’s willing to do this and we’re going to try this new “leave mom out of the loop for a few hours” plan.
I’m tired of the merry go round. I want off. After a while it makes you sick to your stomach. Your horse or your ostrich or your donkey goes up and it goes down, over and over, while the merry go round itself circles round and round, all with the bad-stereo strains of carousel music playing too loud and endlessly, no way off, no one to stop it all.
I just don’t have the fortitude.
[fawr-ti-tood, -tyood] Show IPA
Thus ends a long Thursday. Across the miles I am holding my son in my arms, so close, smelling his hair, breathing him in, and he is calm, and we have snuggle time, and we are both swallowed by a song…a lullaby…